One of my fellow rare disease/chronic illness warriors/sufferers posted a thread on Twitter tonight. She’s quite well known because her condition is very unusual and obvious, but she doesn’t shy away from the camera or public speaking engagements. Her post tonight detailed an eye doctor visit that was made all the more difficult because 1) The eye doctor googled her condition rather than talking to her directly about it – and she is a much more knowledgeable source than Google; 2) The eye doctor left the light shining in her retina while he took a personal call, after finding out that she is extremely light sensitive because of her condition. 

Her post had to do with the appalling way that she was treated. As each of us who have chronic and rare diseases either have done or would like to do, she had some choice words for the doctors following her as pointers on how NOT to treat rare disease patients. At no point did she ever say, “Gosh, I have no idea what to do. I don’t know who to talk to about this or how to go through the proper channels [in Australia] to file a complaint.” There wouldn’t be any reason for her to do that. She’s lived with this condition all of her life and she is actually a very vocal and active advocate.

But of course, there’s some asshole who decided to announce that she should file a complaint. 

No. Shit. Since the original poster wrapped up the thread by saying that she confronted the doctor and quite forcefully said that the rare disease patient is the best source, and a light sensitive patient shouldn’t be left in front of the light scope while a personal call is taken, and she would be following up with the office, and she just looked forward to trying to relax after being in a lot of pain, I responded. I said, “It’s okay – she knows how to handle bad appointments. She’s had this condition her whole life. She’s an advocate and speaks out often.” In other words, go fuck yourself.

Also recently, a young woman ended up in respiratory failure and was in a medically induced coma and on a respirator. She lost days of her life. When I say young, I mean young. Her significant other has been updating us and has been an absolute rock, but they are both scared and worried and facing big changes. Wouldn’t you know it, in the middle of the updates, I see something about, “Can you guys not offer advice, please?” She’s also a rare disease patient with some of the same stuff I have, but some is different, and I know some asshole is telling her that she needs to do yoga or chew on bark and vitamins from the Himalayas or something. So to whomever is sending her unsolicited advice, fuck you too.

Why does this get me so worked up? I was always a sick kid who grew up to be a sick adult. I became really sick in 2010 and it has been a mystery that has been mine alone to solve; no one has traveled with me to see 65 doctors, or see me through all 10 surgeries. There have been a few people who have helped to fill in some gaps, but they have been sparse. I know what I’m doing. I am educating doctors and nurses and physical therapists as I go along. I teach people how to maneuver through insurance. I help people search for doctors – even when there’s a few thousand miles between us.

I have never said I don’t know what to do, I don’t know who to call, I don’t know where to look, I don’t know where to go, I don’t know what to eat, I don’t know what to take, I don’t know what I like, I don’t know what’s best for me. And though I am currently well below my natural quota of 8 doctors, I know how to care for myself.

The next person who says, “Oh, it must be the acidity” after I tell them I can’t eat pineapple because I’m allergic to it, I’m going to throat punch them. Fuck them too. And fuck anyone who gives me unsolicited advice. I’m so over it and you have been warned. This video is much nicer about it, of course.